The story of an elf with Down's Syndrome and her family.

WDAD

Here we are again, our third World Down Syndrome Day. I feel like I’m always banging the DS awareness drum, I really hope it’s not a bore to people.

This time around we’ve got tiny Rex with us, depriving me of sleep and making me a little bit insane (well the hormones post-pregnancy are). So it’s a crazy time. But one thing Rex has done by crashing into our world and turning things upside down; is shine a light on just how wonderful his sister is. I’m not saying him being difficult makes us realise how good Audrey is… Well… I guess I am a bit… But I know he doesn’t mean to, he’s just being a demanding newborn, wanting to feed and to sleep in our arms, crying too much and pooping and weeing at the wrong time… But in amongst the stress and tiring times, we have a beautiful little girl who is unaffected by the chaos – but has the sensitivity to ask if we (mostly Rex and I, the criers!) are ok. She’s offering cuddles and (heartbreakingly), saying and signing “Mummy sad”. She is playing happily by herself, casually saying “Hi Rex” when we bring him into the room, offering him cuddles when he cries. Her emotional intelligence is incredible.

And so, on this day, I celebrate Audrey for being our daughter, someone we love now more than we ever thought possible, who happens to have Down’s Syndrome. And if you let that define her or you make a judgement about what she might be like based on this syndrome, you will be way off the mark. Because I know there are many who are having scans and taking the screening test to find out their chances of a baby with Down’s Syndrome… And some are doing this to “prepare” (they have no intention of aborting), but want to know what’s coming. But many are geared up for aborting if the chances are high – they are thinking they couldn’t handle a disabled child. They may even be worrying about all the difficulties they’ll face. They will probably be wondering what kind of life can someone have with a learning disability? Some may even say that livng with a disability; “well that’s no life at all”. Of course I can’t guarantee things won’t be hard, that their won’t be health issues and struggles, but I can tell you about our daughter with Down’s Syndrome. I can tell you that our experience has been so amazing and that her life – wow, she loves it to the max. She’s having a great time and we love Audrey more and more each day. Now that Rex is here, we look at her as a big sister and we are so proud and excited by the prospect of them being friends forever. We are also thinking about how much she will teach him.

It’s a piece by David M Perry and it’s about raising awareness of Down’s Syndrome through cute pictures and how that does little to dispel the “they’re such happy people” myth and also fails to help raise awareness of some of the real challenges people with DS face.

Ok, so I couldn’t stop thinking about this article because I am 100% a spreader of this “cuteness porn”, but I have no desire to spread a message of sunshine, lollipops and rainbows… In fact my mother actually bought a t-shirt for Audrey when she was first born that said “Smile and be happy” on it and I absolutely lost the plot (hormones!) and made her take it back. I couldn’t think of anything worse for any child to wear (mega cheesy), but even more against it for Audrey – she’s not a poster girl for a constant cheerful disposition!

The thing is, what I think new-mums are looking for, and what I know I was/am looking for, is “inspiration porn”. All I wanted to see (and mostly still do) is that children with DS functioned happily in ‘normal’ families. Actually, no, better than that; I want to see glamorous families! Trendy families! Rock n roll!

I appreciate that it is important to spread a message to the world that people with DS are complex and emotional, that they have sad days, bad times, struggles… but that’s not necessarily the best starting point for awareness.

The leaflet I was passed when Audrey was born had that piece about Holland in it (which was actually lovely) and a lot of overwhelming health issue stuff that I just didn’t want to think about. I still don’t.

Awareness needs to be spread to;

New mums and dads
Prospective mums and dads
Friends
Family
Neighbours
Parents of children your kid will go to school with
That person you pass on the street
Ok, basically everyone.

They need to know that someone with DS is loved by a family of ‘typical’ people and that they aren’t scary or ugly… That they aren’t an alien race of beings… They are human and they fit into families of all shapes and sizes and do ‘normal’ things. They need to feel comfortable around someone with DS and this should lead to better job opportunities, inclusion and understanding.

Personally I don’t think the cuteness factor takes away from the bigger issues… It can be used as a tool to lure people in to find out more, surely? Every mum I follow on Instagram will have lured me in with a cute baby video or picture, but that’s just one part of their story and soon I’m following them through operations, sleep studies, second babies, sleepless nights, developmental milestones… We all share in the frustrations and the achievements, the ups and the downs. I know I’m seeking this stuff out, but anyone could be struck by a cute image or video and end up finding out more.

Macy Makes My Day (check them out on Instagram), is about a little girl with DS and her family… I found this account after a friend told me about this amazing inspirational family and what a cool account it was (the friend had no connection to the DS community, but was following Macy’s story). After following Macy, I found the DS hashtags that led me to countless blogs and IG accounts, all of which have taught me a lot about Down’s Syndrome, the good stuff and the bad.

A year ago this day would have passed by unnoticed… I was pregnant but didn’t know that Audrey was going to have that little something special.

In fact I still remember those early feelings of worry and embarrassment when we had Audrey… I dreaded people knowing I had a Down’s syndrome baby. And now I spend all my time showing her off! Building up an Instagram following… Clocking up those Facebook likes… Wanting people to see, not just how lovely she is, but how ok we are as a family… More than ok, we are happy! Our baby is wonderful.

So on world Down’s syndrome Awareness Day I am pleased to be part of such a great community and to be able to join in, showing the world that the extra chromosome hasn’t taken anything away from our family, hasn’t ruined anything and isn’t anything to be ashamed of.

I still have plenty of worries about Audrey’s future, but she gives us reason to feel positive everyday and we’ll just focus on positivity because as my mum once said describing my husband Ted… It’s good to have a “zest for life” and I can already see Audrey has inherited that zest!